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Med Help

behappy123

By behappy123
in Coping with Celiac Disease

Recommended Posts

behappy123 Newbie
behappy123
Posted

Omg, I just realized, what if my synthroid and exjade have gluten in them?

Does anyone have any experience with Thryoid meds? I don't know what's in mine....

I'm still puffy and feeling gross. Time to live off nothing. :(

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T.H. Community Regular
T.H.
Posted

there is a good site called www.glutenfreedrugs.com that is put up by a pharmacist who will list what has been verified as gluten free

I checked your two, and this is what was listed:

Synthroid (all strengths)-can no longer guarantee gluten-free status

I could not find exjade, but that may mean it's not gluten-free, or that it hasn't been looked at yet by this pharmacist. So it sounds like it may be be a good thing to check your meds, yeah. :-(

If nothing else, hopefully the site may list some thyroid meds that ARE gluten free.

Omg, I just realized, what if my synthroid and exjade have gluten in them?

Does anyone have any experience with Thryoid meds? I don't know what's in mine....

I'm still puffy and feeling gross. Time to live off nothing. :(

ravenwoodglass Mentor
ravenwoodglass
Posted

Look on your script monograph or the bottle to see who the maker is. Then do a search with the company name and the words 'contact info'. That will often bring up a number to call the maker. Sometimes they do have to get back to you as the customer service rep will have to contact the lab for the answer. Also do have your pharmecy note that you need gluten-free meds on your records and remind them when you get scripts filled that they need to call. Note that not all pharmaceys are willing to take the time to do this. If yours won't check ask for the maker before they fill the script so you can call yourself. Once they give you that bottle of pills they can't be returned.

SaraKat Contributor
SaraKat
Posted

My endocrinologist told me Synthroid is gluten-free. I have been on it for a while and have no issues.

Wolicki Enthusiast
Wolicki
Posted

I was told Synthroid cannot be guaranteed gluten free because of the suppliers. I take Levoxyl with no issues. Dont know about the other one, sorry.

compucajun Rookie
compucajun
Posted

I take a lot of meds, and Walgreen's would not help me figure out which ones were gluten-free. I found a wonderful druggist at a small pharmacy nearby that checks all of my prescriptions. May be you could find a new druggist who could help you?

Luddie Newbie
Luddie
Posted

Omg, I just realized, what if my synthroid and exjade have gluten in them?

Does anyone have any experience with Thryoid meds? I don't know what's in mine....

I'm still puffy and feeling gross. Time to live off nothing. :(

I, too, wonder about my generic L thyroxine since I was doing fine until last May or June when I started experiencing lots of pains all over my body. The pharmacy who fills my rx said they had not changed suppliers and gave me the name. I phoned them and they claimed their products are gluten free...but I've been reading on some of these postings that there may be teeny amounts and I may be one of those "lucky" ones who reacts to "teeny" amounts...I'm still having trouble and that thyroid medicine is still suspect. So I thought, well the "Brand Name" Synthroid surely would be the gold standard for purity. Not so as I found out they don't guarantee it is gluten-free anymore. It's hard to follow the path of all the fillers and coatings that are used in drugs. Think back to when the dog food scare happened. You just never know where the ingredients are coming from. I'm thinking about asking to switch to Armour thyroid! <_<

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cap6 Enthusiast
cap6
Posted

Our local Walgreens (so california) was not very helpful but while on vacation found that one in Oregon was extremely helpful. Think that it depends on the pharmacist.

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      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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